F’ing Winter

I have been really fortunate so far this winter.  It’s been fairly mild- not too many super cold days, very little snow.  Which, of course, means very little weather related pain.  This week I have been feeling progressively crappy. I chalked it up to having my period and not walking enough (have I mentioned that I have found a definite link between how much I walk and how I feel?).  Anyway, I’ve been chugging along, assuming that it would pass.

Last night it snowed, our first actual snow (snow less than inch isn’t actual snow when you live in Wisconsin).  We have a couple of inches on the ground, very cold temperatures.  And my body just….hurts.  L asked me if my joints were hurting and I answered that my hips hurt, and my back hurts, and my hands hurt.  Then I stopped and said, “So, yes, my joints hurt.”  It took me actually adding up all the pains to put it together in my head that yes, I am having a very bad day.  In the back of my head, a little voice is saying “Be prepared for a flare.”  I have been so lucky this winter, these last several months actually, to have been getting progressively better, to be responding to treatment.  I have been so lucky, and I have known it.  So now on this bad day, I am scared.  Could this be more than one bad day?  That’s one of the many things I hate about chronic illness- the fear.

So today, I gave into feeling crappy and didn’t go into work.  I am alternating walking around my house and wrapping myself in heat through my heating pad and my heated throw blanket.  I am drinking lots of water.  I am trying not to feel stress. I am stretching, as my physical therapist has shown me.  I am trying to do all the things I can do to stop the bad day in its tracks.  But none of that prevents the fear when I look down at my hands and see the red joints, which has been gone so long I had forgotten their ugliness.

F’ing winter.  I can’t wait for spring.

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Still Hanging in There

Clearly I lied, and I haven’t blogged regularly (again).  Again, I have no good reason except that I haven’t had much to say.  People ask me how I’m feeling, and all I can say is “today is a good day” or “Hanging in there.”  Even on my good days, there’s pain, there’s making accomodations for my limitations.  There’s always an awareness of my diseases lurking in the background.  Frankly I haven’t wanted to blog about that and repeat those things to you because chances are if you are reading this you either a)know exactly how I feel and are tired of it too or b)know me in real life and have to deal with complaints there.

But really, I’m hanging in there.  The Enbrel/MTX/plaquenil combo seems to be just what I needed.  I am down to 7 mg a day of prednisone (woo!).  This Saturday I am going down to 6mg.  Except for withdrawal symptoms, I haven’t had much problem going down on it, in terms of joint pain.  So that’s been pretty amazing.   The fibro pain is still pretty icky, but I am not sure what to do about that.  We’re at the top of the dosage for lyrica.  Dr. K thinks I just need to get more active.  So..I’m trying. I’m trying to walk more.   Started physical therapy again for my back, which seems like it’ll be good, too.  I have a great physical therapist, and I already feel like it’s been worth going, after one session.

So, back to walking.  I’ve discovered this really interesting thing (interesting to me anyway!).  A couple of months ago I got a pedometer so I can see how many steps I take a day, and I pay close attention to the number of steps and how I am feeling.  I have found a direct correlation between how I feel and how much I walk.  In fact, I now know that if I take under a certain number of steps, I am going to feel crappy the next day.  So I have a baseline now for how active I have to be, which has been really helpful. And it’s also been great to feel like I have control over one thing that can make me feel better.

The trick has been that I live in Wisconsin and it’s cold outside!  So getting enough steps takes some creativity, lots of pacing around my house.  Lots of short walks with the dog.  I am toying with getting an elliptical machine so I want to have to go outside but I can still be active.  Anyone have suggestions?

Next week I see Dr. K again.  And then we’ll see where things stand, I guess.  Hoping you are all hanging in there, too!

And I’m Back

 

I haven’t blogged in so long.  I wish I had a good reason.  Mostly, I have just been busy.  I went back to work part time, and balancing work and home has been tricky.  I had a brief period of feeling a lot better, so I tried not to think about being sick during that time.  And then, the rest of the time, I guess I have still been trying not to think about being sick.  It depresses me.

But I guess that’s the way it goes.

So, an update: I have been completely unable to get off of prednisone. I actually haven’t been able to get below 10mg a day, which is pretty scary.  So, several weeks ago we added plaquenil to the mix.  Then we did my labs to check on where I am with things, and my inflammation numbers were still really high.  My pain was pretty high too again.  So, I went to the doctor about a week and a half ago, and we discussed options.  Dr. K recommended we add Enbrel once a week, and hopefully it will work well enough that I can get off the prednisone.  Here’s hoping.

I don’t know what else to say, honestly.  I am trying to be “normal.” I am trying to do chores, and go to work, and enjoy my family.  I am trying not to let pain consume things, but there are days I feel so completely defeated by pain, by the idea of pain, by the prospect of my life being this way.  I feel….tired.  It’s so hard to think about, and it’s so hard not to get discouraged by your body when your body doesn’t like you.

But, I am hoping the Enbrel is the fix.  Or at least helps enough to make it easier to be normal.  We shall see!  I will try to be better at updating here.  I’ll try not to hide away too much, from myself or from you all!

 

 

One Step Forward, Two Steps Back

Even though I know that life with chronic illness is a series of ups and downs, a whole lot of trial and error.  I know this.  But, I let myself lose sight of this as a process.

The last couple of weeks, I had been feeling a lot better.  I was able to walk more, to use my body more.  I started cleaning around the house (the kind of cleaning that ends with big garbage bags of unneeded stuff).  I felt good.  Not great, not pain free, but I felt decently good.

Last Saturday I started my prednisone taper, with the help of my acupuncturist.  The first day was awful- I was nauseous, achy, miserable.  But after the first day, things started to be ok, and by mid-week, my taper withdrawal effects seemed to be pretty much over.  I was psyched.  I started wondering if I could actually move down to the next level (5 mg) sooner than next month.

And then the pain and swelling started.  First in my hands, which were stiffer than they had been.  Then, I noticed my feet were swollen. But hey- I can handle a bit of swelling.  No problem.

Then yesterday, the horrible pain started.  My shoulders and elbows hurt when I moved (though acupuncture helped those); my hips hurt when I walked.  There’s a stabbing pain in my foot.  This is a problem.

Because I know that swelling in my joints means that things are not where they need to be, means that there may be permanent joint damage in the works, I reluctantly emailed my doctor.  I told her about the pain and swelling, that even though I know some of it is related to pms, there is more pain and swelling than there should be; I also added that I really want off the prednisone.  Is there something else we can do, I asked?

Her answer: increase the prednisone back to the 15 mg until my pms pain is over.  And increase the MTX, from 15 to 20 mg a week.

I know this is all a process.  I know that this is normal.  But I can’t help but feel like I went backwards. Taking the extra prednisone this morning, I am just so discouraged.  At the same time, I am willing to risk the moon face and weight gain, if it means being able to function again.

So I guess we’ll see.  I’ll wait a bit and then try to taper again.  I’ll hope for the best with the MTX dosage increase (please, don’t let the nausea also increase!).  We’ll see where it goes, and hope that we keep moving forward.

Good Days and Bad Days

We have good days and bad days.  All of us.  I didn’t think much of them when I was well.  It simply was either a good or bad day, and I knew the bad days would pass and I would have a better day tomorrow or maybe the next day.

It’s all different now.

When you have a chronic illness, the bad days are the norm.  There are, of course, levels of badness.  There are the normal bad days that pass as average to us.  There are the really bad days which mean we have to stay in bed all day.  But, honestly, most days are some level of bad.  Sure, they aren’t all miserable and horrible.  They are just days when our bodies hurt.  When our functioning is compromised by pain or disability.

Yesterday, I had a good day.

It was maybe my first really good day since I started getting sick.  It was a damned good day.  I had very little pain.  I was high-functioning.  I was able to do things like clean out my closet, go through old clothes and sort out for Goodwill, take care of general household chores.  I was able to do things.

It was pretty great, honestly.  I had to try to pace myself but it was hard not to try to cram everything into that good day.  After all, I don’t get many so I figured I should take advantage.  By the end of the day I was tired, worn out, achy.  But no pain pills yesterday, so that was pretty great, too.

Today, I woke up and I didn’t feel too bad.  I thought- hey, cool, maybe another good day.  And then I got out of bed and could barely walk.

Today, I am having a bad day.

And it sucks, after having experienced a good day yesterday.  It sucks.  But at least now I know a good day is possible.  I know it might happen again.  So, today, the thing that can get me through the bad day, is that the little possibility; what has to get me through all of this is hope.

Mornings=Pain

I feel like I should warn you: I’m in a bad mood.

I really hate morning.  I was never a morning person, but now mornings are so awful, so painful, that I just absolutely dread them.  For whatever reason, the first two hours of the day, so many parts of my body hurt, parts that don’t hurt any other time, from head to toe I hurt.  Oh, I am always pretty sure it’ll dwindle within a couple of hours, when the prednisone, naproxen and Lyrica hit.  Til then I am miserable.

It’s hard to deal with mornings when you are in this much pain.

Add to that, no one in my house seems to get it.  I mean, how can they?  Until you have experienced this kind of pain on a consistent basis you can’t really imagine it.  So the uninitiated, the normal people, can try but the most they can come up with is a stubbed toe or maybe even the time they broke their arm.  After all, that kind of pain is bad, no one would quibble with that.  But I don’t think that’s a good comparison.  I am not saying my pain is worse than that, but that it is different.  Having a continual amount of high pain is different, is wearing on the mind and body, in a way that short-term pain just isn’t.  A big chunk of why this pain is so awful is the knowledge that it will be with me forever, that I may have breaks of days or weeks, but this pain is mine.

So no one in my house gets it, and that’s understandable.  And I try not to lash out.  I try hard not to tell everyone to leave me the hell alone until at least nine.  Most days I succeed.  But wow, it’s hard.

Today, it’s just a lot to deal with.  I hurt all over (in case you’re wondering my pain right now is probably around a 6-7 from head to toe), and I have a full day ahead of me, including physical therapy, and all of that just seems like way too much to handle. It feels like too much to expect of me to handle kid pick up, acupuncture, physical therapy, dishes, dinner.  It feels like too much to expect me to keep a positive attitude on top of all of that, to listen sympathetically as everyone else expresses their frustrations which seem so silly to me.  I know I am being unfair, and I don’t care.  I know everyone’s feelings are equally important, but today I just don’t want to do it.  I don’t want to be kind and supportive and understanding.  Instead, I want to take pain medication and hide.  I want someone to take care of me, to be kind and supportive and understanding of me.

But…that’s not the way it goes.  So, I need to pull myself together, ignore the pain until it becomes more tolerable, find some energy to go out and manage my day.  I need to find some damned spoons, because it’s just not going to work if I am out before 8 am.

Yeah, I hate mornings.  And pain.  And pain in the mornings.  But what can you do?  This is my life now, so I guess I have to make the best of it.

Please tell me I am not the only one who feels this way!

Picking a Number on the Pain Scale

I have been thinking a lot about measuring pain.  Yesterday I mentioned that I think people with chronic pain have a different scale than “normal” people.  Our baseline is set differently.  For example, to me a good day is when my pain is a 2-3.  I can not remember a day in the last year (maybe longer, when I think about it) when my pain was lower than a 2.  So for me 2=0.   I have gotten pretty good at analyzing my body, trying to figure out what hurts and how much, trying to figure out which disease is acting up.  You have to do that when you have multiple issues, so you know what’s working and what’s not.  So each day, I am choosing between my RA, fibro, and my DDD.  Almost everyday there is some issue with my back (DDD) and typically my RA and my fibro trade-off (which I feel is pretty considerate of them).

Today my pain was around a 6. Some days I have localized pain that is high and the rest of me is at the 2 baseline.  Frequently, it will be my back or my hands that hit a 7-8 while the rest of me is pretty ok.  Today I was a solid 6 from head to toe.  That kind of pain is rough for me because everything hurts.  I can’t use my hands, it hurts to walk, but it hurts to sit.  Etc, etc.  When I told my acupuncturist that I was 5-6 today and that it was pretty bad she asked, “That’s bad?” I hesitated a moment and I said, “yes when you have already taken a lot of medication and you are at 6.”  What I should have said is that when I say six, I mean that it is hard to function.  I have taken my normal meds plus Tramadol; I have stretched and tried to walk it out; I have done everything I can and I am still miserable.   And maybe it was the fact that so many different things hurt today that made the 6 seem so awful.  Who knows.  Either way she stepped up my treatment and I left feeling better.  Hopefully it lasts.

While I was sitting with all my needles, my acupuncturist talked to a new patient nearby (I go to a community acupuncture clinic so there are several people being treated in the same room).  The woman said her pain was a 2-3, and that it was really bad.  Linda asked the same question- “That’s bad?” and the woman explained that for her, having pain at a 2 meant that she had difficulty walking which was a big adjustment because she’s a runner.

All of this got me to thinking about pain levels, about how we measure pain, about how we compare ourselves to others based on where we are on that scale.  I started thinking about doctors, and how difficult it must be to interpret people’s answers to the pain scale.  If I tell my doctor I am at a 2, I will get happy remarks.  But there may be others who say they are at a 2 and the doctor needs to be concerned.  But how do they know who is who?

It all seems so crazy subjective to me.  It’s no wonder that getting diagnosed is difficult when you have chronic pain.  It’s almost a guessing game!  Maybe doctors should ask patients to create their own pain scales with their own personal descriptions to make it easier to understand each patient.  Mine would like something like this

0-1: obviously I am dead because this doesn’t happen

2-3: a pretty good. Some aches and pains, but nothing major

4-5:  I hurt.   I need pain meds.  I am limiting my activities considerably.

6-7:   I hurt a lot.  I need a steady stream of pain meds, heat, stretching, and I am probably still pretty miserable despite all of that

8-9: Extreme pain that is severely limiting activity; pain unresponsive to medication, heat, etc.

10: I have never ever said I was at a 10 despite years of pain and having 3 babies so if I ever say this, someone should get me to the ER quick because I am clearly dying.

What about you?  What’s your pain scale?

Limping Along

Shrink appointment this morning went fine.  No change in dosage.  We talked a bit about situational depression vs clinical depression.  He explained that they look for a couple of things to determine if someone is experiencing clinical depression.  The three main areas: do you have interest in things, do you show interest in socializing, do you have motivation to go out?  If the answer is no, then they look at timing.  He said a few days is no big deal; the cut off for them is two weeks.  Two weeks of not have interest and not wanting to go out because you’re sad or feel like it’s not worth it means that you may be clinically depressed and may be helped by medication.

He said for me it seems like I am just adjusting to my new reality and things are as they should be.  I suspected that would be the verdict, so it was no surprise.  And frankly I am glad not to be changing yet another medication.

He also asked if the pain was manageable.  And I said more or less, with medication.  He said that his view of manageable pain (and I think his understanding of the medical view of manageable pain) is that if you’re limping along then it’s manageable.  I found it interesting that he used the word limping.  So often, we with chronic pain, think of our old lives when we walked normally, but the truth is our new standards are different.  I was reading something earlier (I wish I could remember where!) that said people with chronic pain have a different scale.  A four pain level is our new zero.  I have found this to be true.  A good day is no longer a pain free one, but one that is tolerable without much pain medication.  So yeah, manageable pain is when we are limping along.

On another front, third dose of MTX is behind me.  This week I have now added the dreaded nausea to the fatigue.  Frankly, I feel pretty awful all around.  Tired, nauseous, achy.  Etc.  Really looking forward to the side effects of this med being behind me.  Or manageable!